Positive or interesting results must be repeated by independent researchers to verify results. In practice it can take many years before “breakthroughs” have an impact on patient care.

It’s also worth remembering that the more subjects a study includes, the more likely the results will be accurate. In small studies, there is more possibility of results being caused by chance. The best studies may need to use thousands of subjects, particularly if they are required to show an effect that is subtle. Small pilot studies may show interesting results, but need to be repeated on larger, carefully selected populations.

UK CMRC Grand Challenge

Action for M.E. is an Executive Board member of the UK CFS/M.E. Research Collaborative (CMRC). At the CMRC's second annual conference in October 2015, Chair Prof Stephen Holgate launched the Grand Challenge project, setting out a new vision for testing and treating M.E.

"Researchers must agree a practical case definition [and then] deliver a pan-UK, joined up approach to phenotyping this group of patients using modern statistical approaches, applied to clinical and physiological routine pathological data.”

Thirdly, he said, we need to collect biological samples, and look at not only disease process but also environmental factors such as diet and chemicals exposure. Answers would surface when biological information was integrated with the different sub-phenotypes. Pathway analysis would be used to unpick the causal mechanisms and identify novel therapeutic interventions.

“It sounds all very simple and straightforward but of course it’s not: it’s very complicated and very challenging. But it is being done in other disease areas and I think this gives us the confidence that we can do it.”

Cancer and diabetes, for example, and Prof Holgate’s own field of asthma are already sub-phenotyping using new methods.

“We all thought [asthma] was a homogeneous condition. We have treatments that are targeted on the basis that it is a homogeneous condition, but it turns out that that is not the case. New technology and advanced statistical methods have shown that there are six different types of asthma which are very different from each other. Each one of those has different causative molecular and cellular pathways associated with it.”

Patient charities, such as Action for M.E., will be needed to help recruit patients across the whole country, says Prof Holgate.

“We need the health professions, scientists, statisticians and clinicians to come together to agree a national protocol and to start looking to the multi-omics technology platforms.”

Meanwhile, he intends to run a two-day workshop for key stakeholders in non-M.E. research fields, who are already using this technology for analytical work. The hope is their knowledge and insight will take M.E. research to a new level.

“This is going to mean putting aside personal ambition and looking at the whole effort as a national effort; here everybody is going to gain if we do it properly. It’s about joining forces and translating the theoretical way of moving this forward into a reality. We can actually deliver on this if we put our minds to it.”